By the way

You have to go see the new Nicole Holofcener movie, starring James Gandolfini and Julia Louis Dreyfuss. The moment Gandolfini appeared on the screen, my eyes teared up, and even though the movie was poignant more than sad, I cried off and on throughout. I can't imagine why Gandolfini's death affected me as much as it has other than I'm fifty years old and a doddering fool.

Sister Mary Elephant

When I was a little girl, my father's sister Gilda died, and my cousin Philip came to live with our family in our small house in New Jersey. I don't have much memory of how that worked out initially, other than that he set up a very cool bedroom for himself in our basement filled with teenage boy stuff and posters. I cringe now to imagine how awful it must have been for him to have lost both parents before he was even into his teenage years, how he lived with three little girls in a different town from the one he grew up in, how he went to a new school and then eventually moved with all of us down to Atlanta, Georgia in 1973. Atlanta, Georgia in 1973 was a very different city than the one that exists now, and I have strong memories of feeling foreign, like a stranger, not welcome but chided for not automatically saying yes, ma'am or no, sir to my teachers at the local public elementary school I first attended. My parents eventually put me into a very exclusive private school that, for the first few years, made me feel even more foreign. Most of the kids that went to this school were from, I guess, what you'd call The Old South. Most were very wealthy, lived in grand neighborhoods surrounding the school and, it seemed then as a painfully awkward adolescent, had no exposure to people like myself -- a half-Italian nerdy girl from New Jersey who couldn't catch a ball or run fast or do anything, really, other than read books really fast and make stellar grades. Did I mention it was miserable? It was miserable.

So, this morning, forty years later, as I drove up 6th after dropping Oliver off at school and headed toward the big baking goods store to pick up supplies for an upcoming order, I listened to the news, the dominant theme being, of course, the pending shut-down of the federal government. I listened to some of the blowhards from Congress talking about Obamacare and how it must be repealed to save us from certain disaster, and then I listened to the report of the opening of California's exchange tomorrow (I've already visited and it looks promising for our family!) and then I listened to some poor soul in Nevada who is looking to extend her unemployment benefits because she can't find a job, but the systems in place to help her will surely go down tomorrow if the blowhards in Congress get their way and then I thought again about my cousin Philip in the paneled room off our den in our house in Atlanta. I thought about his record collection while the voices of the radio droned on and I navigated the hundreds of orange cones on Venice Blvd and then pulled into the parking lot of the baking supply store and navigated through a film set in the parking lot, the voices still talking and talking. Suddenly, Cheech and Chong's voices came into my head, some album of Philip's that was mildly inappropriate for the time, mainly because Cheech or Chong made fun of nuns -- was it Sister Mary Elephant? -- and I heard them talking in my head, right over the thick southern drawl of some conservative Georgian talking about Obamacare, and what they said was:

Classsssssssss! SHUT UP!

Thank you.





Listen to Sister Mary Elephant here.

Meteors, Dyslexia, Tea Baggers and Lemonade

So, it's Sunday. I read about meteors flying over the mid-West, and Ted Cruz, the heinous Tea Bagger senator from Texas who won't give up his paycheck if the government is shut down but thinks it's all right that 800,000 soldiers will have theirs frozen. I fostered a pretty spirited debate on Facebook about the merits of the Affordable Care Act, and how it's going to help so many of us despite its problems. I feel nervous that the Tea Baggers are going to prevail and wish they'd all calm down and let the reform play out. I'm weary of the people who constantly whine about how our political discourse has disintegrated and wish they'd stop whining and say something in addition to how our political discourse has disintegrated. And yes, I'm perfectly aware that it's the Tea Party and not the Tea Baggers. They'll always be tea baggers to me, and I don't give a damn if it's offensive.

 Oliver is outside hawking lemonade again and cupcakes, this time, in an effort to raise money for fishing supplies and the Epilepsy Foundation of Greater Los Angeles. I had a talk last night with a friend's boyfriend who told me about his fascinating youth, growing up in Nebraska, how he was always in trouble, on the road, really, to jail,  his unruly behavior in part due to what was later determined to be dyslexia. It all turned out fine -- more than fine -- and that turning out happened when he learned of his strengths, not his deficits, when his mother persevered, when he made drastic and dramatic changes in his life. I'm reading a book by Ben Foss called The Dyslexia Empowerment Plan, and it's illuminating. Sometimes, when I read Foss' descriptions of himself in childhood, I feel as if I'm reading about Oliver, and little by little my gut instincts about my remarkable child are affirmed. When Oliver was young -- let's say three or four -- he was already such a pistol, as my father would say, that we would shake our heads and laugh, ruefully. A neighbor who has a powerful job in publicity once told me that she is always nice to Oliver because one day we're all going to be working for him. The book is not about overcoming learning disabilities but finding one's strengths and recognizing that dyslexia -- disability -- is just part of one's identity, something to accept, to almost embrace. Simple -- but radical -- stuff.  I think, sometimes, that part of my job with Oliver is to literally get him through school and out, to support him in whatever way I can and to guide him to constantly see his strengths and pursue them.

I price my lemonade at $.75. he says. Because most people will give me a dollar and tell me to keep the change.

So, Ted Cruz? Overcome him like a disease. Oliver? Help him to accept his dyslexia and discover his strengths.

What's up with you, Reader?

Sweet Thing

 And I will stroll the merry way and jump the hedges first
and I will drink the clear clean water for to quench my thirst
And I shall watch the ferry boats and they'll get high
on a bluer ocean against tomorrow's sky.
And I will never grow so old again
And I will walk and talk in gardens all wet with rain

Oh, sweet thing, sweet thing
My, my, my, my, my sweet thing --

Van Morrison wails it here.

Diastat Days

photo by Jennifer W.

I woke up this morning at just after 4:00 to Sophie howling in her bed, not a croon but a howl, the seizure slicing through her throat, air pressed out. She had two more like that, I dithered about Diastat for the thousandth time should I wait should I do it should I wait no do it no wait just do it. I snapped off the plastic top and tore the foil envelope of lubricant, inserted the tip into foil and then into Sophie. Eventually, her eyes fluttered, her hands, in claws at her ears, relaxed. I lay beside her. There is no one to call, I told Suzy, as I wandered the grocery aisles, picking up flour, sugar, eggs, butter, the bad stuff for the five dozen cupcakes I will make this evening. There's nothing to do, sometimes, but endure, I thought, and pushed the for what away. Later, I leaped off the no white food cliff, smeared Brillat Savarin on a baguette, ate it in my car while Astrud Gilberto sang to me.

There is Nothing, Absolutely Nothing, New Under the Sun: Vaccinations and Love Minus Zero

I'm re-posting something I wrote several years ago, as a rejoinder -- in part -- to another round of parents "taking a stand" and coming down on those who choose not to vaccinate their children. However reasoned, the argument is always the same, the simplification grotesque, the tempers flare, implications of immorality abound, there is nothing new under the sun.

I told a friend the other day, that I'm like a fly drawn to shit whenever this issue comes up, that I know better than to enter the fray because it makes me physically nauseous (and I am a woman with an iron stomach, have only thrown up about five times in my life). I typed out my spiel on a Facebook post, decrying the simplification of this issue, was promptly mollified, assured that "children like Sophie should be protected by the rest of us getting vaccinated," the whole herd mentality drone, that's not it at all, not at all, I thought. I went silent.

I told my friend that the O of Sophie's little mouth that embedded itself into my consciousness immediately after her initial vaccines is the O of the nightmare, of the Munchian shriek, of the aversion to all those who profess certainty and loyalty to Science with a capital S. 

Reason left through that O, on the rigid back of Science and Industry, coupled, obscene.

I am reminded, again, of how Science with a capital S has been wrong, so wrong about -- dare I say it -- marijuana?

Their statues are made of matchsticks, as the bard would say, crumbling into one another. Love minus O.

Wednesday, April 28, 2010

Vaccines -- A Very Important Post

Last night, PBS' Frontline aired what was touted as an unbiased look at "The Vaccine Wars" and which I refused to watch because the debate makes me physically ill. About one week before Sophie began seizing as a baby, she received her first five infant vaccines. In 1995, the DPT shot still contained the live pertussis virus, and Sophie had a fever and high-pitched screaming soon after. She was diagnosed with infantile spasms, a particularly devastating seizure disorder and so began our odyssey. While we never made a "case" for it, we have always suspected that those vaccines were, if not the cause, then a catalyst for Sophie's seizure disorder and since then have learned that a genetic predisposition to negative reactions from vaccines is a possibility (I, too, had negative reactions to vaccines in 1963, something I only discovered a few years ago when I took a look at my vaccine records that were all marked up in red). In any case, enough is unclear that we chose NOT to vaccinate the boys and while this was a difficult decision to make, it is not something that we regret.

The vaccine debate rages on and on and the voices are always loud and biased. When I've entered the fray, I have done so at my own personal peril, because like I said, it makes me almost physically ill. I maintain that the issue is complex and that the media and parents often boil it down to a ridiculous simplicity, vilifying the other side with regularity.  I am pasting an email that I received today from our long-time pediatrician, Dr. Jay Gordon, who has responded to the Frontline special with great integrity:

From Jay Gordon, MD, FAAP

Shame on PBS Frontline Show "The Vaccine War"                                                                                                                  April 28, 2010

Last night, PBS aired a show called "The Vaccine War." I was interviewed at great length and in great depth about vaccines and my point of view and expressed my ambivalence about the polarization of this issue and the need for more calm reasoned discussion about the number one question that new parents have. I told Kate McMahon, the co-producer of the show, that there was a large group of doctors and others who cannot be dismissed with the facile label "anti-vaccine" because we still give vaccines and see a place for them in the practice of medicine, but we do not agree with the current vaccine schedule nor the number of vaccines children receive all at one time. A few days ago, Ms.McMahon emailed me to tell me that the decision had been made to omit my interview from the show. There would not be one word from me. She didn't tell me that she had also omitted 100% of Dr. Robert Sears' interview. And that any other comments from physicians supporting the parents on the show in their ambivalence about vaccines or their decision to refuse all vaccines would also be omitted. She left this as a show with many doctors commenting very negatively, very frighteningly and often disdainfully and dismissively about vaccine "hesitation" as they called it. Below is my email response to Kate McMahon. Dear Kate, The "Frontline" show was disgraceful. You didn't even have the courtesy to put my interview or any part of the two hours we spent taping on your web site. You created a pseudo-documentary with a preconceived set of conclusions: "Irresponsible moms against science" was an easy takeaway from the show. Did you happen to notice that Vanessa, the child critically ill with pertussis, was not intubated nor on a respirator in the ER? She had nasal "prongs" delivering oxygen. I'm sorry for her parents' anxiety and very happy that she was cured of pertussis. But to use anecdotal reports like this as science is irresponsible and merely served the needs of the doctor you wanted to feature. No one pursued Dr. Offit's response about becoming rich from the vaccine he invented. He was allowed to slide right by that question without any follow up. Dr. Paul Offit did not go into vaccine research to get rich. He is a scientist motivated by his desire to help children. But his profiting tens of millions of dollars from the creation of this vaccine and the pursuit of sales of this and other vaccines is definitely not what he says it is. His many millions "don't matter" he says. And you let it go. Jenny McCarthy resumed being a "former Playboy" person and was not acknowledged as a successful author, actress and mother exploring every possible avenue to treating her own son and the children of tens of thousands of other families. I trusted you by giving you two or three hours of my time for an interview and multiple background discussions. I expressed my heartfelt reservations about both vaccines and the polarizing of this issue into "pro-vaccine" and "anti-vaccine" camps. I told you that there was at least a third "camp." There are many doctors and even more parents who would like a more judicious approach to immunization. Give vaccines later, slower and with an individualized approach as we do in every other area of medicine. What did you create instead? "The Vaccine War." A war. Not a discussion or a disagreement over facts and opinions, but a war. This show was unintelligent, dangerous and completely lacking in the balance that you promised me--and your viewers--when you produced and advertised this piece of biased unscientific journalism. "Tabloid journalism" I believe is the epithet often used. Even a good tabloid journalist could see through the screed you've presented. You interviewed me, you spent hours with Dr. Robert Sears of the deservedly-illustrious Sears family and you spoke to other doctors who support parents in their desire to find out what went wrong and why it's going wrong and what we might do to prevent this true epidemic. Not a measles epidemic, not whooping cough. Autism. An epidemic caused by environmental triggers acting on genetic predisposition. The science is there and the evidence of harm is there. Proof will come over the next decade. TheNational Children's Study will, perhaps by accident, become a prospective look at many children with and without vaccines. But we don't have time to wait for the results of this twenty-one year research study: We know that certain pesticides cause cancer and we know that flame retardants in children's pajamas are dangerous. We are cleaning up our air and water slowly and parents know which paint to buy and which to leave on the shelves when they paint their babies' bedrooms. The information parents and doctors don't have is contained in the huge question mark about the number of vaccines, the way we vaccinate and the dramatic increase in autism, ADD/ADHD, childhood depression and more. We pretend to have proof of harm or proof of no harm when what we really have is a large series of very important unanswered questions. In case you were wondering, as I practice pediatrics every day of my career, I base nothingI do on Dr. Wakefield's research or on Jenny McCarthy's opinions. I respect what they both have done and respectfully disagree with them at times. I don't think that Dr. Wakefield's study proved anything except that we need to look harder at his hypothesis. I don't think that Jenny McCarthy has all the answers to treating or preventing autism, but there are tens of thousands of parents who have long needed her strong high-profile voice to draw attention to their families' needs: Most families with autism get inadequate reimbursement for their huge annual expenses and very little respect from the insurance industry, the government or the medical community. Jenny has demanded that a brighter light be shone on their circumstances, their frustration and their needs. I base everything I do on my reading of CDC and World Health Organization statistics about disease incidence in the United States and elsewhere. I base everything I do on having spent the past thirty years in pediatric practice watching tens of thousands of children get vaccines, not get vaccines and the differences I see. Vaccines change children. Most experts would argue that the changes are unequivocally good. My experience and three decades of observation and study tell me otherwise. Vaccines are neither all good--as this biased, miserable PBS treacle would have you believe--nor all bad as the strident anti-vaccine camp argues. You say the decisions to edit 100% of my interview from your show (and omit my comments from your website) "were purely based on what's best for the show, not personal or political, and the others who didn't make it came from both sides of the vaccine debate." You are not telling the truth. You had a point to prove and removed material from your show which made the narrative balanced. "Distraught, confused moms against important, well-spoken calm doctors" was your narrative with a deep sure voice to, literally, narrate the entire artifice. You should be ashamed of yourself, Kate. You knew what you put on the air was slanted and you cheated the viewers out of an opportunity for education and information. You cheated me out of hours of time, betrayed my trust and then you wasted an hour of PBS airtime. Shame on you. The way vaccines are manufactured and administered right now in 2010 makes vaccines and their ingredients part of the group of toxins which have led to a huge increase in childhood diseases including autism. Your show made parents' decisions harder and did nothing except regurgitate old news. Parents and children deserve far better from PBS. Jay Gordon, MD, FAAP

Still Life with Beads

It is a still life and still, life.

I love the energy in your house, she said, over the books, the papers, the love whoring dog, her nails on the floor, clicking. Sophie runs her delicate hands through the beads, clicking, clicking.

You're so calm, they say, you're always so calm.

Menial tasks, musing and minutia

Sophie qualifies for In Home Supportive Services funding, and as her primary caregiver, I am her provider. I am actually paid for this, and I couldn't be more grateful for it. Recently, though, IHSS changed the way timesheets are submitted, and over the last couple of months, they've sent out approximately 3,456,789 notices regarding the upcoming changes with sample time sheets, and more than 2,134,678 phone calls alerting us to the changes as well. I believe there was also a summit that addressed the change, but I missed it. I believe I've successfully filled out my first new time sheet but was struck by the old-fashioned Cut and Remove Before Mailing instruction. Surely they don't mean with scissors? I thought to myself this morning, looking for a perforation in the form. But, indeed, one must actually find a pair of scissors in one's home and neatly trim off the dotted edges, and while I did so I bowed my head in contemplation of the various skills that have stood me well during the last eighteen, often interminable years. One of them is finger dexterity, the other a careful attention to detail, and a third the ability to be mindful in all tasks and simultaneously struck with the absurdity of all of it. Every last bit.

How We Do It: Part XXXIV in a series

When I forget to take a breath and take a breath, it's like late afternoon sun that slants through a door, sirens outside, through a glass and down a marble bar. The bartender squints, his shiny black head gleams, I take a sip of amber and swallow. A long time ago, I sat in a pale coffee-checked armchair on the fourth floor with my baby girl. She was inconsolable for hours at a time, twenty out of twenty-four, I wrote in my spidery script in the spiral notebook for the visiting nurse. I tallied the baby's jerks. Despite the twice daily injections, the baby jerked and now screamed. One, two, three, four, five, a slanted cross over upright sticks, hundreds of slanted crosses over upright sticks. Two years earlier -- or was it? -- I had walked with the small bald Vietnamese man, at the back of the crowd, his robed bent frame in front, twenty blocks, peace in every step. I knew to breathe and how to. Sitting in the coffee-checked armchair on the fourth floor with my baby girl, crying, I knew to breathe. Breathing in, I calm myself. Breathing out, I smile, I said in my head, under breath and through it. The small, bald man gleamed at the front of the line, before the baby, in my head as I sat in the chair with the baby, as I sat at the bar years after the baby, as I lifted my glass, the amber, the sunlight. Breathe and swallow.

Poetry In Lieu

Hilton Head Island, 2010

A Recovered Memory of Water

Sometimes when the mermaid's daughter
is in the bathroom
cleaning her teeth with a thick brush
and baking soda
she has the sense the room is filling
with water.

It starts at her feet and ankles
and slides further and further up
over her thighs and hips and waist.
In no time
it's up to her oxters.
She bends down into it to pick up
handtowels and washcloths and all such things
as are sodden with it.
They all look like seaweed --
like those long strands of kelp that used to be called
'mermaid-hair' or 'foxtail'.
Just as suddenly the water recedes
and in no time
the room's completely dry again.

A terrible sense of stress
is part and parcel of these emotions.
At the end of the day she has nothing else
to compare it to.
She doesn't have the vocabulary for any of it.
At her weekly therapy session
she has more than enough to be going with
just to describe this strange phenomenon
and to express it properly
to the psychiatrist.

She doesn't have the terminology
or any of the points of reference
or any word at all that would give the slightest suggestion
as to what water might be.
'A transparent liquid,' she says, doing as best she can.
'Right,' says the therapist, 'keep going.'
He coaxes and cajoles her towards word-making.
She has another run at it.
'A thin flow,' she calls it,
casting about gingerly in the midst of words.
'A shiny film. Dripping stuff. Something wet.'

Nuala Ni Dhomhnaill, from The Fifty Minute Mermaid
translated by Paul Muldoon

School

Forgive my lack of posting today, but I'm bogged down in reading aloud tracts about impetigo and other infectious diseases, courtesy of 7th Grade Science. The reading aloud is courtesy of Dyslexia. I would educate you on the finer points of blisters, crusty, moist scabs and the attendant itchiness, but instead I'm lying down, face-first on my bed while the violin plays plaintive and I restrain myself from telling the Big O that it's all a bunch of bullshit, that he should flee school all together and gather ye rosebuds while you may. Dinner tonight is tacos with all the fixings. A shot of vodka, too.

There's that moment in the early fall when the morning light falls just so through the dining room windows, and this morning as I stood in the kitchen I remembered it from last year and the year before that. So, here we are.

I Limoni

Oliver's text to me this morning
I'm in blue and he's in yellow.

Oliver squeezed lemons again this morning and assembled his lemonade stand at the corner of our street. Today's proceeds went, in part, to the Epilepsy Foundation of Greater Los Angeles. which is our way to make quite literal lemonade out of lemons. Sophie is struggling with near constant seizures these days, and I'm willfully stoic in my witness. This doesn't mean I don't die a bit inside at every bad day. Sophie's eyes implore, and it's a chip chip chipping away at the larger than life-sized boulder that is moi. This afternoon, both Henry and Oliver participated as volunteers with a baseball team made up of kids with special needs. Sophie and I sat in the bleachers with a couple of friends and cheered the kids on. I felt a supreme lassitude, which I imagine is due to the years I've spent in Seizure Land. Some days it's like that, more lemons than lemonade. The weird thing is that I adore lemons and don't particularly like lemonade.

The Lemon Trees

Listen, the poets laureate
walk only among plants of unfamiliar name: boxwood, acanthus;
I, for my part, prefer the streets that fade
to grassy ditches where a boy
hunting the half-dried puddles
sometimes scoops up a meager eel;
the little paths that wind along the slopes,
plunge down among the cane-tufts,
and break into the orchards, among trunks
     of the lemon-trees.
Better if the jubilee of birds
is quenched, swallowed entirely in the blue:
more clear to the listener murmur of friendly
     boughs
in air that scarcely moves,
that fills the senses with this odor
inseparable from earth,
and rains an unquiet sweetness in the breast.
Here by a miracle is hushed
the war of the diverted passions,
here even to us poor falls our share of riches,
and it is the scent of the lemon-trees.

See, in these silences
in which things yield and seem
about to betray their ultimate secret,
sometimes one half expects
to discover a mistake of Nature,
the dead point of the world, the link which
     will not hold,
the thread to disentangle which might set us 
     at last
in the midst of a truth.
The eyes cast round,
the mind seeks harmonizes disunites
in the perfume that expands
when day most languishes.
Silences in which one sees 
in each departing human shadow
some dislodged Divinity.
But the illusion wanes and time returns us
to our clamorous cities where the blue
     appears
only in patches, high up, among the gables.
Then rain falls wearying the earth,
the winter tedium weighs on the roofs,
the light grows miserly, bitter the soul.
When one day through a half-shut gate,
among the leafage of a court
the yellows of the lemon blaze
and the heart's ice melts
and songs 
pour into the breast
from golden trumpets of solarity.

Eugenio Montale, Selected Poems

Monsters of Love and Sainthood

Saint Dymphna, Patron Saint of Nervous Disorders, Epilepsy and Mental Illness

It was the great poet and musician Leonard Cohen's birthday yesterday, and that fantastic website called Brain Pickings posted this on Literary Jukebox. 

Something in him so loves the world that he gives himself to the laws of gravity and chance. Far from flying with the angels, he traces with the fidelity of a seismograph needle the state of the solid bloody landscape. His house is dangerous and finite, but he is at home in the world. He can love the shape of human beings, the fine and twisted shapes of the heart. It is good to have among us such men, such balancing monsters of love.

Coupled with the most beautiful rendition of Hallelujah, Cohen's writing about sainthood makes for a perfect few minutes.

Worship at the church of poetry and song here. 

Boy Conversation #2,368,921

There's a constant war going on in the car between The Power That Is (that would be myself, The Driver) and the Big O. It involves the radio. I prefer KCRW -- both the talk part and the music. The Big O prefers KISS FM which plays the same three or four songs over and over, although sometimes he'll switch to the station that plays fairly decent "old" rock and roll or another pop station that plays one or two songs over and over in between commercials. This morning, I managed to keep The Big O from twiddling with the dial because of an enthralling episode of This American Life, a story that recounted the discovery of pork bung masquerading as calamari. Pork, what? The Big O asked, incredulous? Bung, I said, evidently a slang term for rectum. He still looked confused. I stared straight ahead and said, you know, butt. For once, the Big O was quiet and listened avidly. He didn't touch the dial. When it was over, he shook his head and said that can't be true. That's just stupid.

Later, as we waited in the drive through line at In 'N Out, he switched the station from KCRW to KISS FM which was playing the song of that guy, according to The Big O, that Miley Cyrus had twerked to. I pretended to not know what twerking was, mainly to see if he really knew (which he did), and then I asked him what he thought about that whole incident and he replied the following, quite priceless answer.

Mom, you know it was MILEY CYRUS? You know her, right? First she was Hannah Montana? Then she started singing? Then she got old? Now she's twerking? 

He shook his head. I felt compelled to tie together pork bung, bad pop music, the perils of old age and twerking, but I refrained and shook my head. That can't be true, I said, that's just stupid. Oliver turned that guy off so we could roll down our window and order our lunch.

Looking through windows

I brought my birthday zodiacal month (Virgo) to a close last night with a terrific dinner at a local wine bar. My friends L and C treated me to wine tasting, mussels, shrimp, small plates of olives, crunchy chickpeas and smoked salmon and a few spectacular desserts. The fact that we sat right next to a woman with the Loudest Voice and Most Obnoxious Laugh in the Universe did not stop our own wonderful conversation, and I am once again filled with gratitude at the blessings of friendship.

I'm off to the first baseball game of the season. It's Fall Ball for Oliver. I'm sure that the haircut, color and blow-out I had yesterday will stand me well for another season of sitting in the bleachers at baseball fields in the Valley. If only sitting in the bleachers of baseball fields was slenderizing and brought peace to the soul.

What's going on with you today?

Art by Moye Thompson, 2013

Life is a good teacher and a good friend. Things are always in transition, if we could only realize it. Nothing ever sums itself up in the way that we like to dream about. The off-center, in-between state is an ideal situation, a situation in which we don’t get caught and we can open our hearts and minds beyond limit. It’s a very tender, nonaggressive, open-ended state of affairs.

Pema Chodron, from the short article Stay With Your Broken Heart in Tricycle Magazine. 

Material Girl

I got a bit of birthday money, and when I saw this typewriter marked down from an earlier too-expensive price, I bought it. I adore it.

Now, I'm going to re-arrange the mess that is my office and bedroom so that the Emerald Green Remington will be a centerpiece.

Reader, how's your Friday going?

Medical Marijuana Update: IN TAH RESTING

With cannabis, it’s probably best to expect the unexpected. That said, legalization should be an important priority given the pernicious side effects—or main effects—of marijuana prohibition. Marijuana prohibition is a venal and dishonest policy that has fostered crime, social discord, racial injustice, police corruption, and drug abuse itself, while shredding the Constitution and impeding medical advances. The science strongly suggests that ending cannabis prohibition would be a net positive in terms of public health.

Martin Lee, from AlterNet's "The Potential Miracle Element in Cannabis that Changed Sonjay Gupta's Mind About the Power of Pot"

You can read the rest of the interview here. 

I have nothing new to report on our own medical marijuana front as we are patiently waiting for the stuff to materialize here in California. Why we're in this position is  (perhaps arguably) very much the result of drug policy in this country, beginning with the head of the Federal Bureau of Narcotics in the 1930s, exacerbated by the Nixon administration in the 1960s and 1970s, further escalated and metastasized by the Reagan administration and currently perpetuated by the Obama administration. Kevin Sabet, Obama's former drug policy advisor, is a diehard marijuana prohibitionist, and according to Lee, Sabet maintains that anyone who might benefit from CBD must wait until Big Pharma figures out how to monetize marijuana’s components.

Whether Lee's statements are incendiary or not, we have to wait. In the meantime, Sophie's seizures have ratcheted up so much that I suppose I'll have to shake myself out of the dissociative lethargy and hopelessness that I currently feel and call The Neurologist.

Wink

Sophie's IEP is done -- I set my tightrope up and added a couple of moves to my repertoire. The restraining vest that was ordered into the IEP last spring was ordered out. The Wicked Witch of the West has retired and was replaced today by a young, earnest and extremely efficient man who got it done and in whose mien I detected a kindred acrobatic soul. And Mr. Red Who is Purple?

Bless his heart.

Wink.

Oliver's IEP

Manhattan, straight up with Italian Maraschino Cherries

Easy peasy and really nice.

I brought doughnuts. The team was sensitive and efficient. Oliver was there for most of it, advocating for himself, somewhat shyly, but smiling his beautiful smile throughout.

I'm grateful for this school that he goes to -- it's not perfect, but it's pretty damn great, and I look forward to continued improvement for Oliver's experience with fingers crossed.

I'm feeling drained in general, though, for various reasons. If you'd like advice on IEPs or you're a reader that has a child with disabilities and new to it all, please feel free to email me. And don't read the sentence that follows this one.

Tomorrow is Sophie's IEP which is an entirely different ball game. For that, the drinking begins now. (See above photo).

On looking for a job, unease, and more Jeneva Stone

So, I've been waking every morning with a vague sense of dread, and it's not the usual will Sophie have a lot of seizures today? Will Sophie be alive this morning? Will Oliver be in a good mood or bite my head off? Will Henry make it through high school without sex, drugs and rock and roll? or Will I make it at all, today? Yes, that's the usual, a million worrisome thoughts that generally disappear by the time my eyelids are fully raised and my cheery morning self slips into my body. Lately, though my dread has continued on into the morning, and that's because I'm looking for a job. The work that I've been doing for many years has come to an end -- no more federal dollars for the projects that I've participated in, and the non-profit I am currently under contract with has little to no steady work. The problem with getting just any job is that I have very little flexibility and need flexibility. I have to be ready to deal with Sophie if she has a bad day and can't go to school. I have to make at least $20 an hour to break even and pay for childcare for her to begin with, and then there's Oliver who is at a time in his life where he needs me to be with him, particularly after school. Given the amount of stress in our home -- some of it bloggable and some of it not -- and the ongoing struggles that siblings of the disabled face, I feel that it's paramount that I am readily available for my boys. While I'm perfectly aware that we're fortunate to have one decent income and have had some help from my parents and my up to now steady part time work, I'm also perfectly aware of what I might have earned, might have contributed, might have been doing if my first baby hadn't developed this devastating disorder and been so disabled by it. Let's face it: I'm the CEO of Sophie, Inc., and it's a volunteer position that has reaped many, many rewards but it has also made it extremely difficult to do anything else.

Better minds have grappled with this and are better able to articulate it, and one of these is my friend, the writer Jeneva Stone. Here's an excerpt of her most recent thoughts with a link following to the complete post.

This bit of data changed my self-narrative. I had been grateful and continue to be grateful for the medical assistance Robert receives and the nursing care for which we're now eligible. But had these supports been available sooner, I might have been able to earn more money, pay more taxes, spend more and stimulate the economy, participate at my child's school, and otherwise enrich my community. 

 Instead, I had been cowering and avoiding reading the comment threads that follow news stories about children with disabilities--comments that blather on about families and choices, children who are burdens to society, people who don't want to pay for the needs of disabled children because their parents chose to have them and foist them on the rest of us, people who are concerned about their tax dollars being wasted. How to respond to this? Whine about paying for the incarceration of children some of you out there abandoned and/or failed to parent properly, or your ER costs because you won't pay for health insurance? Hmmm. 

But now I know that by being a responsible parent, I saved taxpayers $7 million dollars at tremendous cost to my family's financial well being. I feel good about that. I've made a real contribution to society, even if unrecognized. Now, please, stop talking trash about me, my kid and my family. 

Jeneva Stone, from Busily Seeking 2.0: The Costs of Caregiving 

Read the rest of it, here. 

Reader, if you are the primary caregiver of a disabled child or children, how do you balance work (the paying kind) with your duties (the non-paying kind) and if you don't balance them, what does it look like? If you are not the primary caregiver but, rather, an innocent bystander, I'm interested to know what you think about this dilemma.

Again, Life is a Loaded Gun

I've posted this before and was in need of it.

Fan yourself.

Goddess

this post is dedicated to my friend S.S., another goddess of

non-verbal communication

That's a small lucite square that I found in a gift shop, years ago, on the marked-down table. What are the chances? It's kind of ugly, but it's also kind of perfect. I often compare my life to that of a tightrope walker, and this goddess appears to have stumbled but is catching herself just in time. This week I have that weirdly called IEP where I suppose I'll be going head to head with Mr. Red Who is Purple, the speech and language pathologist who mentioned that he wasn't going to recommend that Sophie continue to receive AAC (alternative and augmentative communication) services from a non-public provider. According to Mr. Red Who is Purple, Sophie doesn't respond to the iPad. That this is total bullshit doesn't need continued explication here. It's total bullshit. While her "response" is not always consistent, the iPad has become a fixture in her life, tying her to her classmates socially, allowing her to participate in her classroom activities, providing her with entertaining and accessible games and things to watch and interact, and allowing her some modicum of communication.

Mr. Red Who is Purple is a gentle and unassuming man, at best, a Luddite in the middle and an utter joke at worst. The other order of business will be to strike out the strait-jacket like device that was provided to us last spring for Sophie to wear on the bus home. The fact that it was entirely the wrong device and entirely inappropriate for Sophie as it's intended for children who pose a danger to themselves and others by disruptive behavior in the bus was enough to send the LAUSD bus division into a clusterf&*$k of hilarious proportions, and the only way they will now allow Sophie to ride the bus without it is to hold another IEP to strike it from the record.

Do you follow me or have you run screaming from the room?

Anywho.

In the early hours of the morning on Thursday, I will set up my tightrope in the dark and gloomy conference room at Sophie's high school. I'll strip off my jeans and tee-shirt to reveal my worn and slightly ragged leotard. I'll lace up my ballet slippers, adjust the top of my leotard to better showcase my cleavage, stick a chopstick in my hair to use, later, as sword, and powder my hands. I will set this small lucite square in the middle of the conference table over which I will walk and dance and twirl and tarry, my flags waving over the the red and purple and black and white and brown heads below.

Some Days

Some Days

Some days I put the people in their places at the table,
bend their legs at the knees,
if they come with that feature,
and fix them into the tiny wooden chairs.

All afternoon, they face one another,
the man in the brown suit,
the woman in the blue dress,
perfectly motionless, perfectly behaved.

But other days,
I am the one who is lifted up by the ribs,
then lowered into the dining room of a dollhouse
to sit with the others at the long table.

Very funny,
but how would you like it
if you never knew from one day to the next
if you were going to spend it

striding around like a vivid god,
your shoulders in the clouds,
or sitting down there amidst the wallpaper,
staring straight ahead with your little plastic face?

Billy Collins

How We Do It, Part XXXII in a Series: Inappropriate Parenting

Oliver and I took a walk down La Brea to the Goodwill Store. I pushed Sophie, and Oliver rode his skateboard. It was abominably hot. I hate Goodwill stores, but I have grown a boy inside my belly who not only hates to read but lives to go through junk and then collect it. We wandered through the Goodwill, and I effectively persuaded Oliver not to purchase a photo of  Mike Piazza, the former Dodgers player who my older son later claimed took drugs. The photo cost $10 which I told Oliver was way too high for such a thing, and even though he wanted to buy it with his money that he'd earned by setting up and selling the world's best lemonade yesterday (a shocking $83 take!), I told him, no, that's not a smart purchase, at all. For once in his short dozen years on the planet, he listened to me, but he also left the store considerably more surly than when we entered, and since it was still boiling hot outside, and Sophie was humming in her wheelchair, crossing and uncrossing her legs in what appeared to be discomfort as well as emanating a highly suspicious smell, I, too, felt grumpy. When we rolled past the giant plate glass window of a fabric store, behind which sat two plump girls sitting on a couch in air-conditioned splendor, the glass nearly shattered from their baleful stares at Sophie in her wheelchair. I mouthed at them to STOP STARING in my sternest voice, and Oliver looked at me and said that he felt like giving them the finger and I said, Go ahead, and he looked at me and I looked forward so I didn't see whether he'd taken me up on it.

Sometimes you've just got to give in, Mom, Oliver said.

And I agreed.

Lalalalalalalalala

A Short Short Story

They stood on the steps of the old library at UNC-Chapel Hill, the fall of  her sophomore year. They were on the top step, having emerged from the stacks blinking, blinded in the day's light. Her backpack was heavy on her back. She was wearing a Mexican-inspired red ruffled skirt with desert boots, an ensemble that she imagined bohemian in otherwise preppy 1982. He put a hand on her shoulder, and she felt his dry palm through the thin cotton of her shirt. The same bumps on her skin rose at his touch as do when she stepped into sunlight. The bare skin receives warmth and then, shocked, feels a chill, the goosebumps, then the warmth spreads to the tips of the fingers. A sun sneeze. His hand lay there, on her shoulder, so that she couldn't move.

She heard his voice, low, in her ear, a whisper. If we lived in Cro-Magnon times, he said, you would never have survived. I would be the wild cat that ate you up.

The steps under her feet were hard, wide and shallow. She was stuck under his hand and couldn't open her mouth. She felt his fingers on her throat, cool and dry. Blinded, she saw spots, little black dots and at the bottom of the steps, the world, bare and primitive, stripped.

Musical Accompaniment:

Biking from Venice Beach to Santa Monica, Moonshine, Walter White and Looking for a Job

I actually rode my bike with Henry and D from Venice Beach to Santa Monica this afternoon. It was completely overcast when we started, as the summer beach often is, but after lunch and before we biked back to Venice, the sky had opened up to a glorious blue.

Outrageously tiny skaters were racing, jumping and otherwise defying death at this skate park.  It made me want to watch Lords of Dogtown again. Have ya'll seen that? Along with my desire to come back in another life as a surfer is the desire that I have a child who competes in the X Games. Don't tell Henry or Oliver that.

We jumped off our bikes somewhere along the way in Venice Beach, and Henry entertained us in feats of athletic skill. Even at 15 years old, though, he was no match for a guy who looked at least fifty, sported tattoo sleeves, a long ponytail, purple shorts with a spiked belt and was about as agile as a monkey.

I can't figure out how to upload this video properly, but that guy in the beige suit and fancy dress shirt walked up the boulevard screaming for the salvation of our souls. He carried a Bible and was seriously loud. Proselytizers are so interesting to me, and I often wonder how effective they are. As I sit here at my desk at 8:30 in the evening, the sprinklers hissing on, my legs sore and my feet still sandy, I hear his voice shouting Hallelujah, The Lord Jesus Will Save You! in my head, and I wonder what he's up to right this moment.

Ouch.

Tongva Park, Santa Monica

When I got home and Saint Mirtha had left, I lay on my bed with Sophie and read magazines.She slept and occasionally jerked in what I thought was a seizure -- many times -- but then decided was not. Sigh. I read an interesting article in MORE Magazine (for women over forty, ONLY) about a woman in Asheville, North Carolina who produces the best tasting moonshine in the country. Her company is called Troy and Sons. The story was fascinating and very inspiring as she is the mother to three sons, two of whom, now in their mid-twenties are severely disabled. Most of you out there in extreme parenting land know how difficult it is to have a job and take care of your child. Those of you not in extreme parenting land should know that many of us would have a job or wanted to have a job or a career but are unable to do so given the demands of extreme parenting. This is no argument between women who work and women who stay at home -- have I told you before how much I despise that discussion and find it so boring it makes me cry?

Anyhoo.

I'm currently looking for a job, as the big contract I had with a national organization is finished, and the other contract I have with an organization that helps children in foster care, doesn't have enough work for me. Did you even know that I actually have a job and have been working nearly thirty hours a week, off and on for over six years? I like to work, and I need to work -- both because it's stimulating and because I need the money. These jobs have been perfect because they're flexible and allow me to work, for the most part, from home. I get to do what I do best -- write and inspire and advocate for children with special healthcare needs. When Sophie isn't doing well, I can take care of her and stay at home. After reading that article about the woman who makes kick-ass moonshine, I felt inspired to get creative. I'm never going to support myself baking cakes, but there must be something I can spin my skills toward and make a living.

Wait, isn't that what Walter White thought when he broke bad?

Elizabeth the Baker

So, I'm back in business. A tad rusty, but it'll do.

Please email me with your orders at elsophieATgmailDOTcom.

Here's a good poem by the late, great Jane Kenyon:

Fat

The doctor says it's better for my spine
this way -- more fat, more estrogen.
Well, then! There was a time when a wife's
plump shoulders signified prosperity.

These days my fashionable friends
get by on seaweed milkshakes,
Pall Malls, and vitamin pills. Their clothes
hang elegantly from their clavicles.

As the evening news makes clear
the starving and the besieged maintain
the current standard of beauty without effort.

Whenever two or three gather together
the talk turns dreamily to sausages,
purple cabbages, black beans and rice,
noodles gleaming with cream, yams, and plums,
and chapati fried in ghee.

Jane Kenyon

Spreading the LA Love In a Messy Way

Obviously I didn't take the above photo of Los Angeles, but there have been plenty of days that I've looked east and seen that exact view and subsequently marveled over this piece of crowded land that I call home. I'll be honest and say that I almost never agree with my friends who really don't like living here. The complaints are always about the traffic, about the nasty entertainment industry, about the crowds and the many ugly neighborhoods, about the tackiness, about the culture and the plastic surgery and the bad schools and the excessive privilege. I'm moving back to the midwest, eventually, one friend always tells me. I would never want to grow old here. Friends who have also lived in New York say that there's no comparison, that they miss the grit and the darkness and the chic and effortlessly cool people, the walking and the honesty of that city. I, too, adore New York and feel as if the almost nine years that I lived there were among the greatest of my life. I don't think a day went by that I didn't think God, I love this place! and less so, but still frequently, God, I hate it here! I see my fair share of the grotesque here in Los Angeles -- even at my son's benign high school in the San Fernando Valley, you might rub elbows with Larry King and his eighth wife, Sylvester Stallone picking up his kid in a gold Bentley, and a veritable freak show of eighty year old men with trophy wives and teenage kids. But you'll also see the California boys and girls of your imagination, golden skinned water polo players with tousled, stiff chlorine-tinted blonde hair, towels around their waists, jumping into jeeps with surfboards on the top. I won't go into Los Angeles' weather, because you might up and leave, if you haven't already, but what might surprise you is that the culture here -- the sheer size of the city and the incredible diversity -- rivals that of any other city in the world, I think, and you only have to drive

a

bit

to take advantage of it.

Last night, I had the pleasure of listening to my great friend, Tanya Ward Goodman, read from her new memoir, Leaving Tinkertown. She read a bit and then her brother, a tattoo artist and incredible musician with a gorgeous voice, sang songs that he'd written to accompany her. The performance was at a Masonic Lodge in the famous Hollywood Cemetery -- yes, a famous cemetery -- and it was filled with old people, hipsters, artists, attorneys, NPR folks, screen and television writers.  I met an attorney who works with families of kids with disabilities, and it turned out that she reads my blog daily and also knows of the organization that helps kids in the foster care system that I also work for!

Today, I finished a cake for a young girl's sixteenth birthday, and now I'm off to type for an hour at a performance art thingamajig going on at USC. I'll be pecking away at John Steinbeck's Grapes of Wrath, part of a typing pool, and as soon as I find the announcement about it, I'll post it. Maybe I'll even get a photo.

Here's the cake in process:

I don't mind getting old in Los Angeles, by the way, as long as I have these things to do, the sun still shines year round, and I'm able to make a living doing the things I love.

Delirious Sex, Intense Happiness, Tiffany Box Cakes, and Beautiful Moye

I've got a red velvet cake in the oven and nothing of import to report (im and re), except that I'm tired of inspiration and putting one foot in front of the other and gratitude and sayings like Shoot for the moon. Even if you miss the stars. The cake is an order that will be assembled with cream cheese frosting tomorrow and then made to look like it's a Tiffany box. There will be pictures, although this is the first cake I've made in a few months and I'm praying that the old hands won't be stiff and rusty. Sophie is home, sitting in her wheelchair and lethargically playing with beads and an old hairbrush. She had a number of seizures today, so I landed up giving her Diastat (rectal valium) and kept her home from school. This meant that I had to cancel my other plans which included a job interview and a visit to The Woman in the Quiet Room, but I have a babysitter coming soon who will relieve me so that I can go on my Californian rounds and pick up my sons from their schools. The photo above is of a charming piece of art, created by my Oldest Not In Years But In Time Known Friend, Moye Thompson, whose work I've featured before. She is a remarkable ceramist, and yesterday, when I visited her new show, I was once again struck dumb by her beauty and the beauty of her creations and her, herself. The show is called Shelter, and if you're in the area, you should stop by Bergamot Station in Santa Monica and check it out. Here are some more pictures, and then I'll put a copy of the poem that you see above (a poem that I've posted many a time on the old blog that always makes me laugh). And just so you have an idea of her ingenuity, she carved those tiny little letters into clay and then fired the cylinder that you turn with a tiny little twig so that you can read the whole thing. Over the top, Moye.

The poem:

Success Story

My clothes are perfectly contoured
to my body. my shoes & socks
fit just right. My cat is a delightful
intelligent animal. My apartment
is great. The right location,
cheap rent. I eat the best food.
My friends love me. I adore them.
My lover is terrific & beautiful.
The sun is shining. There are trees
even in the slums in Washington.
I have tons of money & a gorgeous 
air conditioner. Great art hangs
on my wall. I live a spine-tingling life
of delirious sex & intense happiness.

Terence Winch

Thelma and Louise

Here they are, evidently escaping from school. Thelma is deliriously happy, as you can see, and Louise perhaps skeptical. I think what's happened is that Mr. Red Who is Purple tried to get them to make jungle animals out of tissue paper while taking turns, and they'd just had enough.

Thelma's mother and I will soon jump into the most fabulous restored Airstream that you've ever seen and join them in the desert. We won't be killing ourselves, by the way, just taking a break from the bullshit.